Anyone have Cutaneous T Cell Lymphoma?

In mid-2022 I noticed 3-4 small dime to quarter size white patches developing on my thigh. A co-worker immediately advised, "go see a dermatologist". In Nov 2022, a dermatologist looked at my spots. At first it was treated as ring-worm. This was a wrong diagnosis. A biopsy shave was done in Jan 2023 and this revealed mycosis fungiodes CTCL type cancer. We started a chemotherapy by gel (Valchlor) in Feb/March 2023. By April 2023, I had gotten an infection in the wound site (I am a biologist deep in the water last season), so I discontinued the Valchlor after 6 weeks. A few months after leaving Valchlor, more spots appeared (dime size) in new areas on my legs and forearms. Now I am using Targretin as a blood test revealed the CTCL in bloodstream. One month in with the 300mg/day of Targretin. All work done at Scripps in San Diego.

I was diagnosed with CTCL in March 2023. We started treating with Valchlor gel (special order/cold storage) and then moved onto Clobetasol 0.05% and I used a at-home UV light daily for 1-2 minutes on the white patches. Now, the CTCL has moved to my blood and am taking 4x75mg Bexarotone (Targretin; a chemo pill) for a total of 300mg a day plus 2 pills to manage hypothyroidism and triglycerides. a long slog so far, with one huge patch (the size of my palm) which Valchlor did a good job at attacking.

I am not using any steroids or any other ointment. I use a UV light box three times a week.

I was treated by radiation on my feet and shoulder. It seemed to control it BUT I was told by my new oncologist that once an area was irradiated it was ineffective to radiate again. I use Clobetasol .05% to spot treat eruptions.

Welcome to Connect @pastororwin580. It looks as though you were diagnosed with CTC in 2015. Would you like to share a little more about your experience? Are you currently being treated for the condition?

Can you share the names of the steroid creams that appear to work for you.
Others may appreciate knowing

Yes since 2015.

Thank you! This is a recent development but it is everywhere mostly torso upper legs and arms. The itching is very bad and he is to receive his first skyrizi injection today. It was biopsied as psoriasis but from the beginning I’ve thought there may be more to it. We see hematology Monday.

Yes, I had a biopsy in 2017 and was diagnosed with Psoriasis. I went through 3 biologic med regimes. Taltz, Tremfya & Skyrizi. None cleared the issue which was primarily hands & feet.
Wasn’t until my WBC started to spiral that the diagnosis became T Cell Lymphoma

Hi. I was never diagnosed with Psoriasis but Eczema. My dermatologist thought that there had been a significant change in a lesion at the back of my leg. When he did the biopsy and after multiple pathologist had looked at the sample I was diagnosed with CTCL. Interestingly if you read through all the postings most people were diagnosed with some type of skin disorder before being diagnosed with CTCL. I now see a a dermatologist and a hem-oncologist. Hope this helps.